Friday, September 27, 2013

a non-update, really

As a follow-up to the last post, I did call our genetic counselor Wednesday.

Since the geneticist was the one who ordered the original kidney tests, I want her take on whether she thinks we need to see a pediatric nephrologist before I begin making appointments.

As I expected, it took a few minutes for them to recall our particular "case" and, because we've been bouncing between healthcare systems, they will need to do a little digging to obtain all the applicable test results.

Do the genetic counselor said she would gather the necessary documents, give them to the geneticist for review, and then call me back.

I've yet to hear anything (which is also expected; the soonest I would hope for a response is this afternoon). But I figure if I don't hear back by Monday or Tuesday, I'll just call on it all again.

I'm still not worried-worried about it all.

But I also don't like the idea that there just might be something wrong with her kidneys.

So some guidance, sooner rather than later, would be appreciated.
- Bethany :)

Wednesday, September 25, 2013

Pause?


I feel like my remote isn't working.

Like I'm hitting the pause button and it just isn't responding.

Ray and I talked a lot in the last week about how if Millie's latest tests were showing no worsening (and hopefully improving) conditions, we were going to be adamant about just taking a break. To stop all these tests and the doctor visits for about six months (or longer), to just allow Millie to work, to focus, to hopefully develop at her own pace.

(We would obviously continue her therapies but stop all these ongoing tests and trips to the Cities for medical appointments.)

As we hoped, and expected, her MRI was OK. No new development, no worsening. No signs of a nerve disorder.

Great!

So I was all prepared to say that we've decided to just let her be for a while now.

Then I remembered that they had also ultrasound-ed her kidneys to check on her perceived pelviectasis (one area of her kidneys is larger than normal).

As it turned out, the pelviectasis was not noted in the imaging report, but her kidneys have not grown at all in six months.

So we have been referred to a pediatric nephrologist.

Sigh.

Honestly, I'm not entirely sold on the necessity of it yet. I mean, she's 2 years old, how much could her kidneys have been expected to grow in six months?

But her kidney sizes - 5.7 cm and 5.5 cm - put her below the 5th percentile for her age, so I'm thinking it may also be better to err on the side of caution.

Again.

That would mean another Cities trip, another specialist, another run-down of her medical history, etc., etc., etc.

Still, while I'm a little confused about the kidney specialist, I am taking the test results, visit, overall as good news.

Here's a rundown of what we learned:

MRI: Pretty darned good. Nothing new to worry about. The myelination is not increased but it hasn't decreased, so yay!

Eye drop thing: Unresolved. Will just watch. It was not a nerve disorder, so yay!

Falling down: Millie has in the last few weeks randomly began falling. It's almost as if her legs just give out. Because it could be seizure activity, we are going to track, record and monitor those for the next month to measure their frequency and if that begins changing. We will report back.

Next visit: Will see the neurologist again in six months for a regular ol' checkup, unless new concerns arise or if the falling down thing is getting problematic and concerning.

As for the pediatric nephrologist, I was provided a list of specialists in the Twin Cities. We can either go through the U of M or Children's.

As always, there was a lot of information provided and Ray and I need to come to a consensus about what we think is best.

I think my first step, though, will be contacting our geneticist. She is actually the one who ordered the original renal ultrasound in March, after we learned of Millie's genetic makeup. It was ordered mostly as a precaution, but then found the pelviectasis. Since our neurologist is not a kidney specialist, I'm wondering if maybe the geneticist could shed some light on the necessity of seeing a nephrologist.

So that's where we are at: pleased overall but also sifting through new medical terminology.

As always, thank you for checking on us.

More so, though, thank you for the positive thoughts and prayers for Millie and our family. We appreciate it very much.

- Bethany :)

Wednesday, September 18, 2013

My Millie...


Lola painted the other day, while Millie was napping.

Honestly (bad mom alert), painting and play-dough are the two activities I struggle with the most. Painting, because I hate scrubbing the table, chairs, walls, fingers, tummies, faces and everything else afterward, and play-dough because I'm afraid it's going to end up on the floor and then in my puppy's belly, or, worse, in Millie's belly.

So I made sure the painting supplies were all cleaned up and mostly put away by the time Millie woke up.

After she did wake up, I went to get her. She was giggling and super happy so I lifted her from her crib and placed her on her feet. She toddled out of her bedroom quickly, getting as much distance as she could between herself and her cage (crib).

But she came to a dead stop as soon as she reached the kitchen.

All she could see, somehow from her vantage point at two feet from the ground, was the very tip of a drying paintbrush.

And she knew.

She ran (or, well, she doesn't run, but she walked very very quickly) to her father, got his attention and pointed very emphatically until she convinced him to follow her into the kitchen, where she proceeded to point at the paintbrush and then herself, over and over and over again. With obvious emotion.

Me, Daddy. Millie paint too.

You could almost hear her through her gestures and signs.

It was a Vikings game day and so it was my call and Ray knew better than to answer for me.

So he, rightfully, told Millie to go ask Mommy.

And again, she toddled over to wherever I was hiding and took me, step by the step through the whole deliberate process: paintbrush, Millie, table, paintbrush, Millie, etc.

And I, of course, caved.

Of course you can paint, I agreed.

I had hidden the easel in Lola's closet (where it goes), out of sight, so I turned my back to Millie to go get it.

She of course didn't know any better, and only saw me turn away. She thought I was saying no.

And she lost it.

I had to pick her up and walk with her to get the easel before I could convince her that she was going to get to paint.

And paint she did.

***

She's smart.

So very smart...

***

A mother the other day attempted to engage with Millie in conversation, very nicely asking her questions.

Millie was receptive, smiling and grunting in response.

But there were no words.

So I filled in a bit as needed, providing Millie's (suspected) responses.

After a few minutes though, I could tell we had reached that impasse, when the nice lady wanted to ask something but didn't know how, or if she should.

"She's mostly nonverbal, more or less," I volunteered.

And that's kind of the best way to describe her these days.

Millie is doing so very great, in so many ways. Walking, learning to tip-toe, to alternate feet while walking up stairs, to climb up and down on her own, to clap, wave and tickle.

But speech-wise, she's mostly nonverbal, more or less.

She does sort of, kind of talk.

She makes sounds very close to words - approximations - but she doesn't truly talk much.

We do hear words from time to time. "Hi there," "Hi Dada" and "Hi Kitty" are most common, but we hear several approximations as well, such as those for puppy, Mustang, Sissy (Lola) and mommy.

She also is progressing with sign language by leaps and bounds. She added another 3-5 signs to her vocabulary in the last week alone. She's up to probably about 30 now, give or take.

We're proud of her, for her persistence, her perseverance.

***

On Monday, I'll take Millie in for yet more tests. She will be sedated for the third time for a third MRI and have a couple of other, less intense, non-invasive tests as well.

I'm not really worried about them.

But there always is that tiny, growing nagging feeling that taunts me, "You were never really all that worried about the first half-dozen tests either..."

So while we try to stay positive and confident, it's always a bit of a battle.

But truly, we aren't expecting any bad news at all.

Prayers are always appreciated...

***

Gymnastics has been a terrific decision.

For Lola, mainly and obviously.

But for Millie too. We sit there, off to the sidelines, watching as Lola and her classmates tumble, jump, swing and fly.

Last week, at Lola's second class, Millie was standing between my knees as I sat in the metal chair, basically holding her back so she wouldn't try to again run out onto the gym floor.

She started bopping, buckling her knees and lowering herself down and then standing up quickly.

She's been working so hard on jumping lately, but hadn't yet done it.

Out in class, we could see Lola jumping, flying off the spring-board into the air like a rocket.

I felt Millie go down and up, down and up, stronger, faster.

And she did it.

She had caught some air and actually jumped.

She surprised herself, letting out the smallest whimper, looking to me for reassurance.

I applauded her, said she was doing great.

So she tried some more.

She jumped about three times that afternoon.

She hasn't done it since but I see her trying, working toward it.

She wants so badly to be just like Lola...


And she'll get there. We believe that.

It just might be a little more gradual of a climb up that hill...
 
- Bethany :)

Monday, September 16, 2013

Life with Lola

"So how was school today?" I ask Lola, as we all pile into the car to head home from daycare.

"Good," she says, disinterested.

"Well, what happened today?"

She brightens, and I get excited, thinking she might unload some charming story about how she met a new friend or learned a lifelong, useful skill.

"We got new toilets!" she exclaims, super excited.

Um, what?

"You got new toilets?" I ask, doubtful.

"Yeah, we got new potties!" she cries, quite happily.

"And guess what? They flush really, really great now!"
- Bethany :)

'And then I'll brush and brush, and brush and brush my hair....'

The first film Lola ever saw in a movie theater was Tangled.

She's been obsessed with Rapunzel ever since.

Well, after this past weekend, I am now ready for her to move onto shorter-haired princesses please.

I spent about two hours on Sunday brushing out tangles in various Rapunzel dolls.
- Bethany :)

Thursday, September 12, 2013

Spoiled much?

So far, after just one introductory session and one official class, putting Lola in gymnastics has been a great decision.

She came home from her first class Tuesday, after learning to hang from bars upside down and trust her body to do all sorts of things she didn't know she could, and went straight to her play set.

Before, she would swing. Then she would hang from the trapeze bar, maybe the rings, and then swing some more.It was kind of like a checklist: Play with A, then B, then maybe C, then A again.

Now, she's pushing herself, standing from the swing and trying to leap for the trapeze bar, throwing her legs on top of it and reaching for the wood that holds the playset together (that 'A' structure at the end).

Last night, she was sitting atop the wooden A, and went from there to the trapeze to the swing, all without touching the ground.

I know, a million other kids can do the same thing and it's not that noteworthy.

But for Lola, it is remarkable.

She fell many times, sometimes pretty hard. But she brushed herself off and went right back at it, knowing that she can do it, she just had to figure it out how. For Lola, who cries for a band-aid at every potential bruise, this is noteworthy.

She's trusting herself, pushing herself.

And loving it.

She and I did cartwheels yesterday.

Actually, I did a cartwheel (which I wasn't sure I could still do, haha) and then helped Lola do several of her own, showing her step by step how one can be accomplished.

She and I did somersaults and a range of different activities and stretches.

And then, because I can nag and whine and beg with the best of them, Ray spent a couple of hours in the workroom creating this...


Lola got her own balance beam.

Really, my goal was to do it this weekend. But, as it turned out, we had everything lying around the house. So, with a little bit of wood and some fabric (leftover from the headboard Ray made me a few years ago), Ray made Lola her own little balance beam.

She got to stay up a wee bit late last night to just try it out (thus the jammies in the photo), but the added bonus was that she was up, dressed and ready to go super early this morning in hopes of getting some playtime before we left for the bus stop.


Now I just have to convince Ray to make Lola her own bar...


I kid, I kid. (Mostly.)

Anyhow, Lola is doing great, learning about what it means to be strong, about what her body is capable of doing, the benefits of exercise and treating her body well.


It's been an amazing week and a half, watching her grow into this new phase of life.

What a kid.
- Bethany :)

Tuesday, September 10, 2013

water babies


(This is a look backward, from about two weeks ago.) 

We spent our last true summer weekend at my dad's lakehome, visiting with family, playing with cousins and exploring the Great Outdoors.

It really was a wonderful weekend. The company was grand, the weather was perfect, the kids all seemed happy to play together.

I've been visiting "the cabin" since I was young, since it was a work-in-progress without much of a second floor. Now, the home houses up to 20-some people, thanks to bedrooms, bunk beds and pull-out couches.

So holiday weekends can really become mini family reunions. There's a lot of energy in the house at any given time.

As a kid, when I needed a break from the activity, I'd scoot on down to the dock and just sit at the end, sometimes on the bench, sometimes with my feet in the water, just looking at the ripples on the surface and watching for signs of wildlife.

On Saturday morning of Memorial Weekend, I woke before most (thanks to my 2-year-old) and Millie and I, together, ventured down to the dock.

We watched the sun rise above the horizon. She sat on my lap, hypnotized as the sun transitioned from red to orange to too bright.

We sang. We prayed. We snuggled.

Millie loved it there, at my dad's, splashing in the lake, running up and down the dock.


I, of course, forgot her life jacket (and a slew of other things, thanks to too-quick packing), so I don't have any pictures of her in the water.

But take my word for it. She was happiest in the water, splashing around in my arms, and playing along the shore, tossing rocks into the water.

She had a great time.

As for Lola, she loves to play and swim in shallow water, but she's not yet swimming.

She's terrified of having water on her face and too afraid of drifting away in the vastness of the lake. So she was still more comfortable being held and directed in the water.

After a while, though, she worked up enough courage to go on the 'Gator and to splash around with her cousins.

Her cousins, much more comfortable in the water, took the 'Gator out onto the open lake, the boat very gently pulling them around the bay.


Lola wasn't ready for that yet.

But she had a lot of fun watching them from the boat.

(Which really was a win by itself because she's usually terrified of boats too.)
 

It really was the perfect weekend at the lake. The weather could not have been more perfect.

But watching the kids playing around out in the water can give adults ideas of their own...

Saturday afternoon, we were all hanging out on the front yard, sitting in the shade watching someone  in the middle of the bay struggle to get up on water-skis. (He never did get up.)

And being the competitive me that I am, I thought I could do better.

So, after about 15 years, I decided to give it a whirl.

How hard can it be? I didn't remember it being extremely difficult.

"How many tries to do you think it will take Mommy to stand up?" I asked Lola. "One? Two? Five?"

"Five," she said. "But I don't know if you'll get up at all."

Gee, thanks for the confidence kiddo.

I don't think I was really nervous until I was sitting in the water, in position, waiting for the "go" signal. It really was harder than I remembered to stay tucked in all together.

But just as I started wondering what the heck I was in for, it was time.

And ... ?

 ... I stood up.

First try.

But before you start thinking I'm totally bragging -- which I am -- I will readily admit that I couldn’t even bring myself to lift my body onto the dock after just two little circles around the bay. I was that tired. And my arms were killing me the next morning when I woke up and my legs weren't too happy with me either.

But it was still totally worth it.

- Bethany :)

Monday, September 9, 2013

growing up...

I got teary-eyed this weekend.

I had tip-toed up to the top floor of our local gymnastics studio, to see how Lola was doing.

I peeked above the staircase railing and found her, hanging upside down, her knees locked around a bar, her braided pigtails swaying side to side.

Lola was laughing.
***

We began last week to purposefully force Lola to confront some fears.

She's always been timid, shy, a bit of a weenie-head. Except for roller-coasters, the kid seems afraid of the whole world some days.

So as we looked this summer toward fall, the beginning of "real" school and the adventures we want her to experience, Ray and I together came to a decision: She needs to leave the nest.

Not completely, obviously. She's 5 years old.

But she needs to get accustomed to life outside of her own house, her own yard.

So last week, we focused on school and all it entailed: getting on the bus, going to a new daycare center after school, learning to be in charge of your own backpack, your own stuff.

After just a few days, I could see she'd already obtained new confidence and pride.

So this past weekend, we moved onto Phase 2.

We took her to her first gymnastics session. It was a free morning clinic, in advance of sessions that officially begin this week.

As expected, we took her in crying, begging us not to make her go. It's in these moments, dragging her into something supposedly fun I wonder about the line separating cruelty from parenting, and I come oh-so-close to telling her we can go home.

But she needs to try. And I held my ground.


After about 10 minutes of sitting with her, coaxing her to try just a few things, she reluctantly went off with the teacher to play around a bit and I quietly excused myself to go sit alongside the other parents on the ground floor, beyond Lola's view.

About 45 minutes later, I couldn't take it and had to know how she was doing.

I quietly went up the stairs and peeked above the wall. It took a moment but I found her hanging upside down, laughing, swinging.

She jumped down, spotted me, smiled and waved.

And then ran off to another station.


 
***

Later, when it was all done, I went to get her ready to go home and she fought me, begging me to let her play longer.

"Do you want to come back again?" I asked, keeping it to myself that I'd already registered for twice-a-week sessions.

She nodded enthusastically.

That night, while she was supposedly getting ready for bed, I found her stretched backward on the floor, practicing her bridge.


Success.
***

Sunday marked the beginning of Phase 3.

Sunday School sign-up.

We went to Rally Day at church, where we all gathered, signing songs in the sanctuary and learning the rules and expectations of Sunday School.

Class begins next Sunday, so this wasn't too difficult of a morning.

But I'm not expecting too much of an issue next week; her Sunday School classroom is in the same room as her preschool was last year.
***

Lola will face additional, similar situations soon enough, as we get her involved in Girl Scouts, swimming and more.

But for now we're adjusting to the idea of this new stage of life, one with a school-aged kid and all the activities and challenges that come along with that.

We're excited.

- Bethany :)

Tuesday, September 3, 2013

First day of K!

Lola's first day of kindergarten was one to remember.

Life with Lola is always an adventure.

She was so excited for school.

She was upbeat, positive and completely looking forward to it...

... until it was time to actually leave.

She first got a wee bit nervous (which was to be expected).

(Yep, I have no problem over-sharing our lives online, but I do draw the line at publishing the name of her school, our home address and my cell phone number on the Internet, so I'm censoring myself here. Oh, and, yes, I did make her wear a little sign/badge. I don't have a great history with school buses and she had to transfer buses to get to and fro school; call me a "helicopter" mom if you want, but it gave me piece of mind. Temporarily.)

But she was still really proud of herself, ready to go off to school.

And we were thrilled for her, so very proud of our little girl.



When it was time to leave, we all walked from our house to the bus stop and that's when things got tough.

Really tough.

Lola had a meltdown, bawling and begging us not to make her go on the bus. Ray had to physically carry her onto the bus to make her leave.

It was really hard.

And yes, a few tears were shed from Mommy too.


But, I was to see her just a little while longer.

Parents were invited to spend the first 45-60 minutes at the school to help the kindergartners ease into the classroom setting.

So I was there, waiting to greet her at the school grounds when she got off the bus.


She was just fine, as Ray kept telling me she would be.

Together, we had about 15 minutes outside, just visiting and talking through what she could expect.

She got a wee bit nervous again when it was time to line up, sans parents, for her first walk into the building.

"No more pictures, Mommy!" she said. 
Yeah, right, does she know who she's talking to? * smile *

But once we got inside and she found her cubby, her coat hook and her table, she was just fine.

She was ready.



- Bethany :)